Be Inspired! 8-Year-Old Superhero Takes on ALD

Second grade. So big but so little. An academic year filled with spelling and vocabulary words, simple math fast facts, and learning how to use a keyboard. And maybe at home, there’s growth in independence and in the ability to help with house chores. All of this combined with the simple pleasures and fun of playing with bubbles, drawing with sidewalk chalk, and riding a bike, without training wheels.

Most second graders are probably 7-8 years old and big fans of Teen Titans Go and Captain Underpants. With all that there is to being a second grader, a diagnosis of adrenoleukodystrophy (ALD) just doesn’t compute.

Adrenoleukodystrophy (ALD) refers to several different inherited conditions that affect the nervous system and adrenal glands. The three major categories of ALD are childhood cerebral ALD, adrenomyelopathy, and Addison’s disease.

It is a deadly genetic disease that affects one in 18,000 people. It most severely affects boys and men. This brain disorder destroys myelin, the protective sheath that surrounds the brain’s neurons — the nerve cells that allow us to think and to control our muscles.

ALD causes relentless progressive deterioration to a vegetative state or death, usually within five years. It knows no racial, ethnic, or geographic barriers.

If an ALD diagnosis becomes a new reality in the equation of a little 8-year-old boy, then what is a parent to do? Thinking these parents from Connecticut have the right idea with their plans for a fundraiser. Their young son, who is in second grade, was diagnosed with ALD, and his parents have organized a dinner benefit at their young son’s elementary school. A whole community rallies with support for this family—the type of support that makes this writer want to sing, “TRA-LA-LA!!!” Click here to read more.


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